What are the odds?
So we go to the hospital, get all hooked up on the EEG (the hooking up didn't go as well as the last time!) There were a lot of tears but at least the man didn't make us swaddle Daniel, he sat on my lap and cried......which is hard cause all I wanted to do was pick him up and put him on my shoulder and tell him we were all done.
So we get all hooked up and they bring us up to a room. Not the single rooms that we normally have been in but we are SHARING a room, with some people that do not care that there is a small toddler in the other 1/2 of the room who is trying to sleep. I made sure that Daniel wasn't loud, that he didn't cry.........I was very respectful of their space and kept the noise level down. They on the other hand did not. So 1/2 way through the night, the nurses decided to switch our room. Not a problem, thank you very much we appreciate that.
So they hook us all back up in the room across the hall. And Lonnie says to the EEG tech person, "That monitor looks weird", (this is the monitor that you can see Daniel's brain waves, normally) And she says, "Oh yeah, its set to low. This way the technician that reads it will see the spikes easier when he has a seizure." Oh OK, well you're the one who gets paid for this, we're just here taking the test. So we leave it at that. Up until the room switch Daniel did not have any seizures, he did have some seizure activity after the room switch at night and in the morning. Which were EXACTLY what we wanted to catch on the EEG.
We did an EEG 2 months prior but there was no seizure activity on there. So that is why we are doing it again, to make sure that Daniel's seizures are indeed Infantile Spasms, if they are infantile spasms we need to start Daniel on ACTH. So we were sad on one hand that Daniel was having the seizures, but on the other hand we were happy that they were being caught on the brain waves and the video camera.
So on Monday, I patiently wait for the Head Nurse from our neurologist to call me. I was sick all day. I wanted the confirmation that what Daniel was doing was either a seizure or it wasn't. And if it was a seizure what type. The type if very important. If its not IS, then we don't have to do ACTH. Each time the phone rang I cringed.........wanting them to be calling but then not wanting it to be them. I didn't know if I could handle the results. I was scared.
So Monday at 4:30 p.m. the Head Nurse calls and said she's had a horrible Monday nothing was going as planned.........OK, that didn't sound good for me, so I take a deep sigh, and say to myself, "It is what it is, and we'll handle it as best we can". In that few seconds of her telling me she had a horrible Monday I prepared myself to join her club of "F'ed up Mondays".
So she proceeds to tell me that none of the spasms were caught on the EEG or the Video. Pardon Me? What? Can you repeat that please? You're telling me that they were seizures?
"No", she says, "what I'm telling you is that the second half of the testing, after the room change wasn't hooked up right, we show no brain waves for Daniel, nothing came out."
ARE YOU KIDDING ME??
Now, mind you, I know its not her fault, its the moron who switched our rooms, and gave us the lame-assed excuse of "Oh the technician likes it that way" Well sure he does, cause there isn't anything there for him to read you Butt Nugget!
UUUGH, so again we do not have 100% confirmation that they are IS seizures, but the Video from the test was still good. So the doctor looked at the video clip of where Daniel was having seizures and after talking to us has decided that in his opinion (he is one of the best in his field) they are IS seizures and that we need to get them controlled immediately. We need to start ACTH. Just what I didn't want to hear.
Well along with that wonderful F'ed up Monday News...........Daniel caught a cold while we were at the hospital, and is not sick..........meaning his immune system is weak right now so we cannot start ACTH until everything is cleared up because ACTH weakens the immune system and a small little cold could turn into a huge big nasty bug. So now we wait, until Daniel gets the OK he's clear on the cold from the pediatrician.
Does it ever end?! I just want to curl up and cry.